Living in a reality that starkly contrasts with societal norms can be an incredibly challenging experience. It is akin to inhabiting two separate worlds within the confines of a single body. The constant scrutiny and disbelief from others can create a profound sense of isolation and alienation. Every step taken is accompanied by the weight of judgment and misunderstanding, making even the simplest of tasks a daunting endeavor.
The continuous questioning and dismissal can undermine an individual's identity and connection, resulting in a profound feeling of vulnerability and disillusionment. Living in a state where your core being is doubted ~ a distressing experience that can impact mental and emotional health.
Navigating a reality that deviates significantly from societal norms can be a lonely and exhausting journey, requiring immense inner strength and resilience to endure the continuous skepticism and criticism that accompany it. Alzheimer's caregivers offer their assistance solely out of compassion and kindness, without expecting any personal gain. They are happy to provide support to those in need.
Let us all make an effort to foster empathy and comprehension for individuals who are in such a delicate position, as the weight they carry is one that only a few can truly grasp.
Caregivers who have chosen this path, whether as a profession or a part-time commitment, constantly find themselves at odds with their experiences compared to the rest of the world. While a few negative individuals may tarnish the reputation of caregivers, the vast majority - around 90% - of paid caregivers are tirelessly working, underpaid, and unfortunately often overlooked for the invaluable blessings they truly are. They are undervalued and underappreciated by those who fail to recognize their worth.
I have had many roles.
Daughter
Coworker
Business Partner
Co-owner
Boss
Friend
Caregiver
No one likes the words of the last and current role. It has a negative connotation and creates:
Angst
Anxiety
Anger
Chaos
Confusion
Disconnection
Fear
Lack of trust
Loathing
Sadness
If you have never been a caregiver, it is a thankless, cruel, and disastrous role that is polarizing and lonely. A vicious cycle of managing the longest day with the one who needs care and the chaos surrounding those who do not understand.
It sounds harsh and demeaning- I'm sure it might. The truth is still the truth. There is no glass slipper or silver lining in caregiving.
Patience
Understanding
Empathy
Sacrifice
Sadness
Kindness
Love
Devotion
Pain
Suffering
Misunderstandings
Confusion
Chaos
Need
Contempt
Loss
And the list can go on and on...
Controlled environments - consistent routines.
'Don't you think you are being a bit extreme?'
The answer is unequivocally NO.
Why?
Science
Neuropsychologist
Alzheimer's services on a local, state, and international level
Governor's Office of Elderly Affairs
Social worker
Therapist
Caregiver support groups
Attention to specialists
Attention to detail
And last but not least...
EXPERIENCE
You couldn't possibly know unless you knew.
I do know what I see, think, and feel.
Perception can be deceiving when we base our understanding on limited exposure to a situation. Merely believing something to be true does not automatically transform it into a fact. The brief moments we dedicate to a particular matter each week, month, or year only scratch the surface of reality; they are fleeting instances in the vast expanse of short-term memory. However, for individuals grappling with Alzheimer's disease, these fleeting moments can hold significant weight, especially if they involve someone of importance or trigger poignant memories from the past.
Living with Alzheimer's is akin to embarking on a rollercoaster ride filled with unexpected twists and turns. It is a journey where no one, neither the afflicted individual nor their caregiver, emerges unchanged by the end. The shifting landscape of priorities becomes starkly apparent, even for those who may have once been perceived as the least important players in the scenario.
It is crucial to approach situations with empathy and understanding, recognizing that the reality experienced by those dealing with Alzheimer's is complex and ever-evolving. Each interaction, no matter how brief, has the potential to shape the narrative and impact the lives of those involved in profound ways. Navigating this intricate terrain requires patience, resilience, and a willingness to embrace the uncertainty that accompanies such a challenging journey.
The feeling it's reality:
It is more comfortable to be complacent and 'ok' with the lack of detailed knowledge needed to know honestly.
6:30 am is the time to get coffee, and morning medication, and start the day. Breakfast is a question mark this morning as the protein shake is not appealing, and the memories of the past are present. Knock on the door and walk into the room, smiling and laughing at whatever was on the iPad that caught the attention.
"The cat threw up this morning."
Where?
"On the chair."
A couple of seconds go by...
"The cat threw up on the chair."
Which chair?
"That one."
A giggle and a smile and back to the iPad.
Why don't I clean that up while you take your vitamins?
"Ok, the cat threw up on the chair."
I'll take care of that... tell me about the article you are reading.
"I wasn't reading an article."
I apologize - I must have misunderstood...
"The cat threw up on the chair."
I see that - I'll take care of it. What's on the iPad this morning?
"Oh - I've been reading an article."
Oh, cool, anything interesting?
"Not really - she's beating me at Scrabble."
I was able to clean the chair - all better.
"What was on the chair?"
Thirty minutes later, the conversation is logical without incident - no memory never ever happened.
The task at hand is as follows:
The cat vomited on the chair, causing concern and annoyance. In the past, the chair would have been promptly cleaned after the cat left. However, today, the cleanup was neglected, resulting in frustration over the dirty chair. Once cleaned, the issue was resolved.
To conclude, the minor challenges are just that - minor. Short-term memory loss related to Alzheimer's disease is a significant change for everyone involved, but it doesn't have to be complex.
It requires:
- Patience
- Understanding
- Kindness
- Duty
- Ability to find humor
- It's not about the caregiver; it's about the person experiencing the loss.
The main challenge lies in the daily struggles being already difficult without external judgment from those unaware of the situation.
You are not an expert if you don't know the 23 1/2 hours daily. You are on the outside looking in.
Don't judge what you don't know.
Love and light- peace and calm.🌺
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